Sunday, July 08, 2012

It is difficult to say, as an outsider, what factors weigh most heavily in the minds of public decision makers when they make decisions which impact a community, especially a vulnerable community like children with tertiary level care requirements.

In May 2005 it was announced that a very valuable resource was going to be closing in New Brunswick. There would be no new patients accepted for treatment by the Stan Cassidy Centre for Rehabilitation tertiary care autism team. The announcement sent shock waves through most of New Brunswick's autism community, at least outside Saint John where that city's CACI leader Debbie McDonald was interviewed on CBC radio and took the position that the closure of the Stan Cassidy Centre autism team was a good thing:

"wow this is too hard to believe … but in some ways I think its kind of good that the Stan Cassidy is kind of toning down its autism um efforts and kind of focusing on what they do really well, which is rehab you know rehab care center for a … for a variety of issues"

In the rest of the province, from Moncton to Maugerville to Fredericton to Miramichi and to points in between the reaction was different. Under the leadership of the Autism Society of New Brunswick we voiced our outrage as parents of autistic children, and, to their full credit, the decision makers listened and responded meaningfully. The Stan Cassidy Centre tertiary care autism team was brought back from death's door and is today a vitally important element in the delivery of New Brunswick's autism service. The Centre's role is even more important as an autism resource now that the Province of New Brunswick, under the Alward-Carr-Porter government, has walked away from the internationally recognized UNB-CEL Autism Intervention Training program as the training agency for early intervention workers and education aides and resource teachers working with autistic children and substituted in its place in house training with an inevitable loss of quality and integrity.

The letters that follow are a small but significant sample of the Autism Society New Brunswick advocacy that was exerted in order to revive the Stan Cassidy Centre's tertiary care autism team. It was the kind of effort that is required of parents today, all of us, dinosaurs and rookies alike, if we are to preserve NB's autism gains in early intervention and education and accomplish something in adult autism residential care and treatment. An adult residential treatment facility is needed in Fredericton near our province's autism expertise.

We must revive the spirit that let to our initial gains to protect those gains to the extent possible and to protect the lives of our autistic children as they .... and we ... grow older. Governments will often ignore autism problems unless parents speak up.

It has come to our attention that officials at the Stan Cassidy Centre for Rehabilitation have unilaterally decided to stop accepting referrals of pediatric patients with Autism Spectrum Disorder (ASD). Our understanding is that currently 20% of the pediatric referrals to Stan Cassidy are for those with ASD.Needless to say, if this decision is allowed to stand, it would be a devastating development for those families that rely on this centre for services such as speech and occupational therapy. These families would be left without services in some cases and forced to fend for themselves. It would also leave a hole in an already insufficient network of services for individuals with ASD.

We find it unacceptable that the Autism community was not consulted on this decision. We request that this decision be reversed until such time as we in the Autism Community have had an opportunity to make the case that this decision will unduly punish many individuals who rely on the treatment they receive at the Centre.

I would respectfully request an immediate meeting with members of the Autism Community including representatives from the Autism Society of New Brunswick to discuss this matter.

The following letter was sent to Ron Harris, the director of the Stan Cassidy Centre in Fredericton:

I am a parent of a child on the Autistic Spectrum Disorder. I am deeply distressed to hear Stan Cassidy will no longer accept referrals or serve this population of children. I implore you to reconsider. Your decision to no longer provide services to our autistic children will have a profound and direct impact on the quality of life of our children.

For parents who were fortunate to have some intervention from the Stan Cassidy Pediatric Team, it meant the lives of their children improved to the point where they learned skills to cope within a school environment. It also gave parents the tools to teach skills, thus improving their children's lives at home.

Eliminating this service is a an absolute deal breaker.

Our older children for the most part have no service, and for policy makers within your organization to eliminate such an essential service will only serves to increase the burden on parents who are already stretched to the max.

Please recognize the consequences of your decision. It will be detrimental on the lives of autistic children and their families.

I would like to add, your pediatric team of professionals always gave me hope, encouragement and a direction that would improve the quality of life for my child. Without their guidance and direction, my child would not be where he is today.

LILA BARRY

Miramichi

Daily Gleaner | Readers' Forum

As published on page C7 on July 19, 2005

Decision on autistic children doesn't add up

This is a copy of a letter sent to the Stan Cassidy Centre for Rehabilitation, pertaining to their change of mandate.

When first I heard of the decision to discontinue services to autistic children, I assumed, giving you the benefit of the doubt, that budgetary constraints had motivated this disastrous and hurtful determination.

Now that I have read your press release, in which you rationalize this decision on the basis that the skill sets required to provide services for autistic children are different than those required for typical treatment provided by the centre, I am stunned.

You are discontinuing a vitally important health and education service without ensuring that a replacement model of service delivery is available.

You offered the absurd rationale that these services are being discontinued because they are not typically provided, and that it will be difficult to find the people with the skills to provide the service.

As someone involved in the autism community, I know you have lost some of those skilled personnel, and some potential personnel, solely because of your decision to discontinue services to autistic persons.

Your excuse has become a self-fulfilling prophecy.

You attempt to reassure us that a new model will be developed to replace the existing model for delivery of the services previously provided by the centre.

After breaking trust with the autism community, you now want us to trust you when you assert that, somehow, a replacement model will be developed when you have no authority or means to provide such a model, other than the one which you are now discontinuing.

Your re-assurances ring as hollow as the excuse you offered for discontinuing these services.

Harold L. Doherty Fredericton

NB Telegraph-Journal | Readers' Forum

As published on page A7 on July 18, 2005

Children with autism have been let down

It has been brought to my attention that services provided to autistic children by the Stan Cassidy Centre for Rehabilitation have been discontinued effective June 21, 2005. I have no knowledge of under what circumstances this decision was made, and am deeply shocked and dismayed.

To further my dismay, no one from the autistic community was consulted or made aware of this decision. Nine years ago, the Stan Cassidy Centre provided my autistic son the benefit of a multi-disciplinary team assessment, recommendations for his early intervention worker, and our family with the tools he needed for neurological rehabilitation in the form of intensive behavioural intervention. Stan Cassidy provided our son with direct therapy every three weeks until he reached the age to move into the Regional Health Authority Paediatric Rehab Team. Since he has been school age he is under the services of the Extra-Mural Program. Stan Cassidy was a vital link to proper interventions for the autistic population.

Stan Cassidy's multi-disciplinary tertiary team travelled the province, into the rural and remote areas providing assessments and recommendations to parents, schools, local paediatric rehab staff, etc. It is a vital and much needed service.

. The number of autistic children on the caseload at Stan Cassidy must have been high, which further perplexes me as to this decision. Dr. Harris is the executive director of Stan Cassidy, and has been involved in the autism community sitting on various committees. I know because I sit on these committees with Dr. Harris.

Again, children with autism have been let down, and a vital link in the chain of services broken. I would like to know what prompted this decision, and full disclosure made to the public and autism community.

Children with autism will continue to be treated at
the Stan Cassidy Centre for Rehabilitation.
The board of directors of River Valley Health last
week reversed a decision made earlier this year - at
the administrative level - to stop treating children
with autism who do not have a physical disability. The
policy was to take effect in 2006.
"We're elated," said Luigi Rocca, president of the
Autism Society of New Brunswick.
"We weren't at all happy with the original decision,"
he said.

Autism is a serious neurological disorder that
typically appears during the first three years of life
and has a profound effect on communication, social
interaction and sensory integration.
Autism, an incurable condition believed to be genetic
in origin, affects about one in 500 individuals
worldwide and is four times more common in boys than
girls.
Intense behavioural therapy has been found to help
improve social and learning abilities, but experts say
that for most autistic people, the condition continues
to have some impact throughout life.
The original decision to discontinue treatment of some
children with autism was announced in May.
At a recent meeting of more than 30 stakeholders from
across the province, John McGarry, president and CEO
of River Valley Health, apologized for the lack of
dialogue that led up to that May announcement.

The Stan Cassidy Centre for Rehabilitation is a
tertiary care centre that provides services to
children across the province in rehabilitation
including speech language pathology and occupational
therapy.
Diane Morrison, senior vice-president of River Valley
Health, said the centre has treated children with
autism for many years and built up a level of
expertise.
"They were looking at their resources and how the
resources were being utilized," she said about the
initial decision.
"Like most services there was more demand than you
have the resources to meet."
Children with autism represent about 20 per cent of
the case load at the centre and required more than 20
per cent of resources to treat, she said.
Morrison said it was initially thought that that
children with autism could be better served elsewhere,
particularly children without a tertiary
rehabilitation requirement.
If a child with autism did have an accompanying
rehabilitation requirement they would still have been
seen at the centre, she aid.
Morrison said the meeting with stakeholders was
positive.
Following that meeting, and after further discussion
within the organization and at the board table last
week, the decision was made to continue the service,
she said.

The board motion to continue the service also called
for the creation of a provincial working group to
develop recommendations that will help ensure the Stan
Cassidy Centre's autism services are sustainable and
integrated into treatment across the province.
Morrison said it was concerns about sustainability
that prompted the May announcement.
She said if the centre has just one speech language
pathologist and one occupational therapist then the
service is fragile.
"We need to make sure that we can put in place plans
for sustainable service," she said. "We are trying to
take systemwide approach to this."
Morrison declined to comment on whether the regional
health authority would need additional funding from
the province to make the autism service sustainable.
"I don't want to presuppose the recommendations to
come out of the working group," she said.
Another meeting with stakeholders is planned for Oct.
14.

Rocca said the dispute has highlighted the overall
lack of resources allocated to autism in New
Brunswick.
The Stan Cassidy Centre for Rehabilitation does not
have enough resources on its own to deal with autism,
he said.
Rocca said that stakeholders are pleased that when
they complained they were taken seriously by officials
at River Valley Health.
He said they quickly reversed their decision and did
not let it drag on for months.
"We are starting a meaningful dialogue," said Rocca.
"We will be involve in finding a solution.
"We hope we get the same response from the provincial
government."

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The effectiveness of ABA-based intervention in ASDs has been well documented through 5 decades of research by using single-subject methodology21,25,27,28 and in controlled studies of comprehensive early intensive behavioral intervention programs in university and community settings.29–40 Children who receive early intensive behavioral treatment have been shown to make substantial, sustained gains in IQ, language, academic performance, and adaptive behavior as well as some measures of social behavior, and their outcomes have been significantly better than those of children in control groups.31–4American Academy of Pediatrics, Management of Children with Autism Spectrum Disorders

"We have to look also at environmental factors, and from my point of view, the interaction between the genetic factors and the environmental factors ... It looks like some shared environmental factors play a role in autism, and the study really points toward factors that are early in life that affect the development of the child"
Joachim Hallmayer, MD, associate professor of psychiatry at Stanford University in California

Even Out Environmental and Genetic Autism Research Funding

Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones.

We need to even out the funding.

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My Autism Pledge For Conor

Today I pledge to continue;I Pledge to continue to fight for the availability of effective autism treatments;I Pledge to continue to fight for a real education for autistic children;I Pledge to continue to fight for decent residential care for autistic adults;I Pledge to continue to fight for a cure for autism;I Pledge to continue finding joy in my son but not in the autism disorder that restricts his life;Today, and every day, I Pledge to continue to hope for a better life for Conor and others with autism, through accommodation, care, respect, treatment, and some day, a cure;Today, and every day, I Pledge to continue to fight for the best possible life for Conor, my son with autistic disorder.

Dr. Jon Poling : Blinders Won’t Reduce Autism

"Fortunately, the ‘better diagnosis’ myth has been soundly debunked. ... only a smaller percentage of this staggering rise can be explained by means other than a true increase.

Because purely genetic diseases do not rise precipitously, the corollary to a true autism increase is clear — genes only load the gun and it is the environment that pulls the trigger. Autism is best redefined as an environmental disease with genetic susceptibilities."

We should be investing our research dollars into discovering environmental factors that we can change, not more poorly targeted genetic studies that offer no hope of early intervention. Pesticides, mercury, aluminum, several drugs, dietary factors, infectious agents and yes — vaccines — are all in the research agenda.

Conor

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It's NOT About ME

I am the father of two sons one of whom is severely autistic with intellectual disability. I have advocated for autism services for autistic children, students and adults in New Brunswick, Canada and I blog and comment about autism on the world wide web. And I like to walk .. a lot.